MelissaCrystal

Plane rides make me feel extremely dizzy and at times nauseous, when we are rising or falling in altitude. Last time I flew, I felt drunk (which wasn't so bad) but it wiped me out for a full 24 hours afterwards, and I had a bad POTS episode with digestion issues and severe exhaustion. I also had a pretty bad migraine while on the plane too. I hope your traveling goes okay! Just drink LOTS of water, and maybe read up on how divers prepare for deep sea diving.

This probably isn't related to POTS, but one time I had intense pain in my jaw, almost like there was air bubble in my tooth. It was the worst pain I've ever experienced in my life. I was so desperate to make it stop that I tried my best to pull the tooth out---it was horrible. Lots of weird pressure problems with me...I have no clue if this connected to my POTS though. I have never had a cavity, so I can't blame it on a dentist leaving an air bubble, you know? Plus it was high up in the gums, like it was in the root or something. Very odd. I'm going to kind of avoid planes if I can until my POTS is successfully on the right treatment plan.

So I guess there's no way of knowing for sure if my case of Chickenpox is what caused my Dysautonomia, and perhaps the fact that my dad had a similar case is just a coincidence. I heard that if your immune system is faulty, you can have a worse cause of chickenpox than others, so maybe that was the case for us.

There we go! Man, I couldn't find the right key words to search for it =) It's crazy odd to read that post because the muscle spasms in the back of my ribcage is a new symptom for me too.

I can see how anything can be a catalyst if you have an autoimmune disorder, but I definitely don't have one and that isn't the type of reaction I was referring to. Is the Chickenpox virus the type of virus that can do nervous system damage in non-autoimmune instances though? Do we even know? Or maybe I didn't read your post correctly, I'm not sure.

I feel worse when i drink, even a sip. My heart rate goes up immediately, and I get very dizzy.

It's weird that sometimes this happens to me and sometimes it doesn't. But I have noticed it depends on what meds I'm on---and yeah, I know, I wasn't supposed to be drinking while taking them =x I never drink a lot though--only a little. (no excuse)

I have no clue if Chickenpox is the kind of virus that attacks your nervous system----I just know that it lives dormant in it.

Other viruses that have been known to trigger POTS actually do affect the nervous system during the course of the sickness. I have no clue if Chickenpox is one of these. I can't figure out exactly why it can damage a newborn's nervous system---like if it has something to do with the virus, or if it's just because newborns are so fragile.

I also have really bad Chickenpox scars, and so does my dad. My mom said she was really careful that I didn't pick at them, and we constantly had the bad ones covered with bandaids to try and prevent scarring. I scar easily, so I don't know exactly what contributed to my bad scars. All I know is that it was one of the worst cases you can have as a kid, with many many waves of new pox forming over and over (big ones, too), and it lasted really long.

I'm still on the mission of finding out what caused my Dysautonomia to make sure it isn't anything fixable, and so far I haven't been able to rule out any of my previous suspicions. Like all of us, there are just too many symptoms, and they don't all make sense with one diagnosis. All I know is that it is generalized Dysautonomia, with the symptoms of POTS, and I have joint/ligament problems as well, which may or may not be related.

I've recently found out that my father has many symptoms that I do (I don't directly communicate with him, no relationship) and that his symptoms started when he was a small child. He had bladder problems, and all kinds of stuff--same thing with me as a kid. He's was disabled at 40, and has basically every problem with his body that you can think of, with many many many surgeries and meds and no relief. He's never considered looking into what I have because he's stubborn and thinks he knows exactly what is wrong, and he hates doctors. But anyway.

I also found out that we both had really, really bad cases of Chickenpox. Supposedly, in infants, chickenpox can damage your nervous system and result in Dysautonomia and permanent nerve damage. But as far as I know, there are no articles about older children having nervous system problems after a bad case of chickenpox.

I'm thinking that if this is genetic, and we both had it wayy before puberty, that Chickenpox might've been the trigger. It's not like knowing anything about this will help me, but if this is the case, I might be able to stop searching for the cause.

Anyone read or find any more articles about Chickenpox and the nervous system?

Hey guys,

So I've been getting this weird sensation lately. Once, I was laying in bed and all the sudden, I felt like the bed was soaking wet on my back, so I yelled "**** CATS", then I feel the sheets, and it's dry. I feel my back, thinking it might be sweat, but it was dry also--not even clamminess was detected. Then it happened again on my butt while I was walking---I thought I was sweating, but went to the restroom to make sure I wasn't sweating through my clothes, and I felt my backside...not a drop of sweat, yet it still felt wet and cold. Then last night, I was breaking eggs into a pan and I thought I poured a whole egg on my leg. It felt like it was dripping down and everything----I checked my whole leg, and had my boyfriend check it too to make sure my hands were working right. No egg, no dripping, but the feeling was still there and didn't go away for an hour.

Anyone experience imaginary ice cold water on their skin?

I still can't feel my toe---it is completely numb to me (if any of you remember from a couple weeks ago...we thought it might've been a pinched nerve from a disk or something). The numbness has spread to half the top part of my foot, and now this weird cold, wet sensation.... I'm starting to think I have something more serious than just puberty-onset Dysautonomia. I'm trying to imagine how this could be related to Ehler's Danlos, but I can't think of a connection there too. I'm really hoping all this isn't permanent. I really don't like symptoms that have to do with sensory issues.

Any ideas about what could be causing this?

I had a fun night in San Francisco, but man am I exhausted. My legs feel like they aren't my own anymore. No drinking for me tonight because I wanted to be able to walk. The SF fireworks were awesome =)

I hope everyone else was able to have some fun! Happy New Year!

Crap, Guys. You don't know how bad I want a good delicious expensive glass of wine. Now I'm tempted.

Just don't stand up, and maybe you will be able to enjoy it? With low BP passing out will be easier, but it really does make me feel nice... and more energetic for some reason.

I "self-medicated" with alcohol for like 3 years during college. Not to party, but to feel better in the evenings when my body would give me trouble. That was the only sleeping aid that worked on me too. I started having pretty low BP in the mornings though because of it, so I stopped.

I've always been mystified that I feel better with alcohol. It makes my BP too low though usually, but that isn't one of my worst symptoms ;p If I overdo the drinking though, I feel like I could die, hah. So I have to be careful.

Very odd indeed...

The only other thing the internet says is that anxiety attacks have been known to cause brain zaps. Hmmm

Wikipedia says that some people taking Prozac in one study had an adverse brain-zap side-effect from taking the drug

A 2005 review of adverse event reporting showed that descriptions of "electric shocks" from patients on paroxetine had been reported more frequently than some other symptoms.[9]

You might be getting it from your meds, orrr...

Maybe pressure on a nerve?

http://en.wikipedia.org/wiki/Paraesthesia

It said that brain-zaps is often called paraesthesia of the brain by doctors. Brain-zaps can be caused by a special kind of headache too... Very vague.

Hope that helps. I really can't find anything from diabetics or sugar readings that can cause it though.

I wanted to make sure you saw my post in your last thread:

http://dinet.ipbhost.com/index.php?showtopic=11409

I'm pretty sure your blood sugar is not what is causing your bad POTS episode. You said you were having "brain-zaps" which is a sure-fire sign of drug withdrawal. I don't want you to keep suffering or wasting time looking for another problem if it is indeed withdrawal from your Lexapro. Brain-zaps don't happen with any other problem than drug withdrawal. Are you changing your doses with your SSRI? I've been keeping track of most of your posts just because we seemed so similiar, and you had said in one of them that you try to go off Lexapro often and your nervous system crashes because of it. It's not your nervous system crashing, it's your body withdrawing.

I went through the same exact thing as you so I wanted to make sure you feel better soon. Drug withdrawal makes you feel like you're dying, and it's worse with POTS. I also thought my blood sugar was doing weird things when I was withdrawing from Paxil. It seemed really low at times, and I also called my doctors. They were all stumped and frustrated with me. Turns out it was my meds, and once I properly tapered off them, I felt worlds better.

Low blood sugar makes most people lose weight, because the body cannibalizes itself when in the low-states. But your metabolism can definitely fluctuate when you have POTS. If I were a doctor, I'd say your weight gain was most likely due to the SSRI's. Makes most people gain weight, and some people lose weight.

Btw, "brain zaps" are a extremely common side-effect to drug withdrawal. Have you skipped any doses of your meds or lowered the amount lately?

I had that horrible sensation when I was tapering off Paxil. It was insane...there was no mistaking how it is described, definitely a brain-zap.

If you aren't tapering off or skipping any meds, maybe we can learn what our body is specifically going through during drug withdrawal (perhaps a brain chemical change, etc) and try to figure out if it has something to do with a temporary deficiency or just the nervous system fluctuating.

Definitely look into "brain zaps" as a withdrawal symptom though, since that is the same exact sensation millions of people experience during withdrawal.

Edit:

I looked through your posting history and found this:

i was diagnosed in 2004, put on lexapro and lopressor, and this did help quite a bit, my question is, why is it when i try to go off of it, the lexapro, why do I get sick again, I know I will never be able to go off the beta blocker because i have tachycardia, but why do i need lexapro, i hate taking it, it makes me fat, i was thin before i started taking these meds, i have tried other ssri, but they make me sick, lexpro is the only ssri i can take, i just don't know why when i try to go off of it, my nervous system fails.

Lexapro is definitely giving you withdrawal side-effects, and that's what is sending you into these episodes. When people withdraw from meds like Lexapro, they develop tons of symptoms that are indistinguishable from the usual POTS symptoms. It feels like a bad POTS episode, and then you add brain-zaps to it, which isn't associated with POTS---definite withdrawal. I went through the same thing as you, and I had to CAREFULLY taper off my SSRI. It took a half a year, and every single day I withdrew at the same exact hour before I needed my dose. It was horrible...really really rough time for me. The funny thing is, my blood sugar was doing weird things through this period too.

Definitely be careful with your Lexapro dosage. If you need to go off it, you have to taper the slightest amount. POTS people aren't normal when it comes to getting off drugs, so you need to do it extremely slow.

If you need to get off lexapro and you can't stand the withdrawal effects, there are some remedies that are scattered along the 'net. One "cure" for brain zaps is Malic acid and Magnesium supposedly... might be worth a try. Best cure though is taking the drug---works extremely quickly and you will feel wonderful within an hour or two. Then the next day, cut just a bit off the pill...you'll be able to figure out an amount that gives you no effects. Takes some practice, but the worst thing you have to do is take a little bit of the pill when you're feeling bad.

Lexapro can definitely make you gain weight, so it might be worth it for your body to slowly get off Lexapro and find something that actually does something positive for you. I'm in the same exact position.

It could well be a trigger. I wonder if there are any studies on the onset of autoimmune illnesses or hypermethylation of genes post immunisation?

I don't have any links on hand, but if you do a search I'm sure you will come up with some studies that back that up. The package insert for the MMR vaccine lists Type 1 Diabetes as a possible adverse reaction. Type 1 Diabetes is autoimmune.

Jessica

Yes, if you have Type 1 Diabetes or any autoimmune disorder, a vaccination or even a seasonal allergen can cause a flare up of the immune system. Autoimmune disorders sure are a handful---there are so many things that can cause an autoimmune response.

Neurocardiogenic syncope is a temporary loss of consciousness associated with a drop in arterial blood pressure, quickly followed by a slowed heart rate (Grubb & McMann, 2001, p. 133).

Neurocardiogenic syncope (NCS) is also referred to as vasovagal syncope or neurally mediated syncope. The terms are used interchangeably throughout this web page.

This is from the Dinet website^

I think NCS is diagnosed upon loss of consciousness due to postural changes or holding your breath, at least that's how my doc told me I didn't have it---I didn't pass out on the TTT and when I held my breath.

People with NCS can have postural tachycardia but you won't be able to tell if she has NCS from just that. POTS is a combination of symptoms that someone with Dysautonomia has. Anything over 30 BPM upon standing is supposed to be abnormal, but it is normal to have some hr increase.

Pots:

Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.

A person can have both NCS and POTS, too...so it definitely can get confusing. But NCS is actual diagnosis, whereas POTS is more of a list of symptoms to help someone get diagnosed with whatever is causing the POTS. Some people have POTS though with seemingly no cause, and the problem can be genetic. Mostly though, POTS is just categorized as a combination of symptoms of Dysautonomia.

My blood sugar goes all over the place, but according to my doc, I'm fine and don't show signs of anything to worry about. It's so confusing...

Do you think it might be costochondritis? I have that sooo often, and it's really similar to what you're describing. If you google it, maybe you can see if that might be similar to what you're experiencing. I get it whenever I'm stressed, sometimes I get it randomly it seems like. I also get it during POTS episodes and if I cough. I've had a bad attack from it too, where I could barely breathe because my sternum hurt so much, and I ended up at the hosp. That's when they diagnosed me with that---it's supposedly very common. Ib profin gets rid of it completely for me, but some people need something a bit stronger.

Just an idea though, the above posters sound like they have very similar symptoms to what you're having as well. I hope you find out how to stop it!

You have all certainly given me some new ideas. I will do some research on this and hopefully talk to my dr. about it.

By the way, I tried to taper off about a year ago by taking 3/4 a pill instead of a whole one and I had the same bad reaction so I went back to the whole pill. Now I take a whole pill at night and 1/2 in the morning.

Before I started the Florinef I had never experienced anything like this. I do have asthma and allergies. I cannot take albuterol because it makes my heart race, which is why I'm on the Pulmicort steroid inhaler.

I was never like this a couple years ago either, but my POTS worsened and now my chemical sensitivity is through the roof. I'm pretty sure it's your system, not the drug, unfortunately. I wouldn't say that about an addictive drug though, but Florinef really isn't supposed to do that. To us, sure, but normally, no. So I'm pretty sure you and I just got worse, POTS-wise, and that's the difference =)

I feel a horrible squeezing and painful hiccups/stabs, but my doc insists they are normal or nothing to worry about. As someone already said, definitely doesn't feel normal, especially when I'm doing nothing to aggravate my heart, but it's always good to get your heart fully evaluated. Kind of hard to trust doctors sometimes with Dysautonomia symptoms, huh?

The tests they did on me were a tilt table, which showed pots and oh, even when on meds. they then did more testing to determine if the cause is neurological or vascualr. they did hemodynamic testing, to show where my blood pools when I change positions. They would have tested for blood volume, but I'm allergic to their contrast agent. they then checked autonomic reflexes--valsalva, sweat, hr variability. The upshot is that my reflexes are intact, but I pool too much because of poorly constricting veins. I also have a "hyperkinetic" heart. The new recommendations involved increased florinef to increase blood volume, cardiac rehab, and an abdominal binder after I eat. No explanation of my nocturnal chest pain, and no real interest in helping me figure out what that was about, which is disappointing. They were not as good about communicating betweeen departments as I might have liked.

Where any of these tests really scary? Like did you suffer having to undergo most of that testing? My TTT was excruciating and I'd hate to ever have to do it again. I thought I was dying with my BP dropping below 40/20. I'm hoping the other testing isn't as traumatic. Took a week to recover from the one of my worst POTS episodes afterwards, too.

You can try first taking little leaps in the tapers, but as soon as you start withdrawing, you can reverse the withdrawal symptoms pretty much instantly by taking it. I had to do that for a while with some of my meds, until I found the right taper or substitute. Just remember it may take a long time for your body to adjust. I had to learn so much patience.

Definitely start off small, just like we have to do with everything! It was a shock to my body for about 2 weeks and then I felt GREAT. After about a year my body didn't like it as much, but that's just me. Just remember not to judge it right away--wait for your BP and everything else to adjust. Definitely should start off small though.

I would have kept myself in shape so that I don't have to be so much worse from deconditioning. I didn't even know there was anything seriously wrong with me until then, during college when I was working on projects cooped up in my room. If I had kept in shape, I would have graduated by now. Deconditioning ruined everything. I just thought my body was odd and sensitive, not haywire like now.